Hello. I have been on the thyroid journey for a long time now and I don’t seem to be getting anywhere fast. I was diagnosed with hyperthyroidism 3 years ago and before that I was hypo and was treated with levothyroxine. I am now on PTU to try and get it under control. I have been having my six weekly bloods as my statistics have been out of kilter I have reduced my medication from 100mg propylithoiracil to 50mg since December as my levels seem to be going into hypothyroidism. I recently had a blood test for my TSH, T4 and T3 I was wondering if someone could tell me what they think. I know my TSH is higher than it has been in the past I’m usually in the very low end now I seem to have crept up and is high. When I got my last results in January it was discussed at length what we should do and I told my endocrinologist how I was feeling and it was my decision to stop the 50 mg of PTU for the six weeks to see if there was any changes and maybe reduce the TSH reduce to a more normal level. It did go down a bit from November on the 50 mg reduction but is still quite high. I don’t feel well i must admit I have the most dreadful head pains and neck pains (may coincidental as I do have spinal problems but it’s only been this bad in the last few weeks) I am tired all the time and my muscles ache and my legs are quite weak. Lack of energy creates lack of motivation and a fuzzy head. I know this might not have anything to do with my thyroid but I just thought it is a possibility. Any advice would be helpful.
November 22
TSH 6.25. (0.27- 4.20)
T4. 16.5. (12.0 - 22.0 )
T3. 5.6 (3.1. - 6.8.) Reducing to 50mg from 100mg PTU
January 23
TSH. 4.22. (0.27 - 4.20)
T4. 17.7 (12 - 22.0)
T3. 5.3. ( 3.1 - 6.8 )
I did have full bloods at the end of last year and everything came back absolutely fine except my vitamin D was quite high 120 I think the scale is something up to 70 max but this hasn’t been flagged up.
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Suffolklady
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Iron and nutrient deficiencies are more common with thyroid issues than elevated levels. Have you been supplementing Vit D? If you can post iron and nutrient levels including the ranges (numbers in brackets) members willl comment.
I can't see exactly which antibodies you have been previously tested for. Hashi can initially present similar to Graves and it's possible to have a mix of antibodies but there have been members prescribed anti-thyroid meds in error. Also advise if you have had any thyroid gland scans.
Thyroid hormones need certain cofactors to work well and adequate or high levels are not a guarantee that enough is working on a cellular levels. Medics tend to compartmentalise our conditions but the body is holistic working as a whole. We have thyroid hormone receptors in every bodily cell, and so insufficiencies have vast repercussions not only creating new conditions but exacerbating existing, and all of which medics may not link.
I notice in your bio you take prednisolone presumably for your spinal condition? Medicating corticosteroids are great for reducing inflammation and pain management, etc but the off set of high amounts are many side effects including alterations to thyroid hormone & TSH levels. Has this been explained to you?
Sorry about the slow reply I haven’t got the latest statistics for my last bloods of January this year only the ones above. I did have a letter saying I’ve got a slightly low folate and it might be useful to include folate rich diet. I started on some I bought and didn’t feel great so I stopped them (upset stomach). I used to take vitamin D in the winter but with a stat of 107 (optimal 75) I stopped them this season. I take prednisolone for my PMR but that’s affected my adrenal function so I can’t just stop that.
According to the letter my vitamin B12 is fine as is FBC and iron level.
just read your previous posts .. crikey you're on a thyroid rollercoaster aren't you.
your previous history /results and especially the hospital episode with T4 >100 and T3 34 ish ..... as well as the more recent time your T4 levels increased from 30 to 40 despite increased dose of PTU.... all show that you definitely do need anti thyroid drugs (PTU) to control your thyroid hormone levels. ( well 'sometimes' you do anyway )
But your thyroid function is not saying stable at all..... and you have ?2 previous times of being on Low dose levo due to slightly high TSH .
From this history of results it would appear that you are one of those people who have Graves antibodies that overstimulate the thyroid ( although as fare as we know ,you have never seen any evidence that these antibodies have been tested to prove it is graves~ just a letter that said GRAVES on it )
But the fluctuations you have had indicate that you have something else as well a Graves 'stimulating' antibodies (TRab )affecting your thyroid hormone levels.
there are a couple of possibilities that would explain your fluctuations :
a) the levels of TRab antibodies fluctuate ~and as they do the affects on the thyroid fluctuate
there are actually two sorts of Graves antibodies that have opposite effects to each other , and depending on the level of each antibody at any given time , that antibody's effect will dominate the thyroid function ., ,and if the levels of each antibody are balanced at times, the effects can balance each other out .. making it very very hard to figure out what is going on.
'stimulating' TRab (also called TSI) ~ these 'ask' the thyroid make too much T4/T3 (makes you hyperthyroid with very high T4/T3 and low TSH)
'blocking' TRab ~ these stop the thyroid being 'asked' to make enough T4/T3 ( makes you hypo... with lower T4/T3 and higher TSH)
b) or it's possible to have Hashimoto's AND Graves .. so in that case there is some degree of thyroid destruction from the hashimoto's ( which worsens over time) .. combined with some degree of over stimulation of the thyroid by the 'stimulating' TRab of Graves.. but as these can fluctuate you get a similar outcome .. fluctuating between hypo/ hyper and generally being unstable. (TPOab are the antibodies that are used to diagnose Hashimoto's ,, BUT these wont confirm hashimoto's if you also have Graves , as they are very also common in Graves) )
These continual fluctuations must be making your life very difficult ( and you 've already got enough going on with your other conditions) ... at some point you may want to discuss something called "Block and Replace" with your Endo .... they give a higher dose of PTU to totally shut down the thyroid .. and then use Levo at the same time to replace a steady dose of T4 ...... hopefully this stops the fluctuations .. and you are just dealing with life of a stable dose of Levo .. that's the idea anyway .. I don't know if it always works that way in practice ,, but you could ask him about it as an option going forward.
If i was in your position now i would really want some proper clarification of:
~ what levels of Graves antibodies (TRab / TSI) you have now.
~ what levels you had in the past if they were ever tested.
~ possibly a thyroid ultrasound scan to see what they can see about the condition of you thyroid from that .
Yes I have been tested with antibodies but it was a while ago I think the next time I’m having them checked again. As far as a diagnosis I have Graves it’s in writing. We were waiting for my thyroid to stabilise but it’s not consistent. As my TSH was higher than it should and I reduced the propylithoirocil from 100mg to 50mg in 6 weeks it reduced as you can see from above so that’s why I decided to stop it for at least 6 weeks until the next bloods. I have an old copy of TSH antibodies level I presume this is what you were talking about it as 3.16 not sure what this means?
TRab (Thyroid Stimulating Hormone Receptor antibodies ) it can be be found written in several different ways TRab ..... T(sh)Rab ... TSH Rab ...etc
So yes, "TSH antibodies" sounds like it was the right test to confirm graves to me .
and most TRab ranges are quite low ~often anything over about 1 or 1.5 ish is 'positive' , but it depend on the lab range that was used for that particular test.
Does it have a lab range after that result of 3.16 ?
I am hypothyroid and Hashimotos. I am on levothyroxine of 50 mg and liothyronine of 5 mg, t3 and t 4. Blood test here in USA every 6 months seems to work, i am not familiar with ptu, May be your coming off ptu May help, i tried ndt but always came back to levothyroxine.
BTW, do u exercise and do meditation? For me, walking, Tai chi and meditation help along with meds. Good luck
I have mobility issues so not able to exercise walking is hard only general do movement but nothing like exercise you are talking about. No never tried Tai chi. Meditation would be a good thing I’m sure it’s hard to clear my head so never been very successful. Thank you Suzi.
For anyone who struggles with the 'empty your brain and sit still ' bit of meditation ( i do ) then i can strongly recommend learning tai chi ... if you find someone who knows how to teach it properly then it is very beneficial even when done from a chair.. and as the mind is busy (in a focussed way) with remembering how to move the body from one posture to the next how to breathe correctly during each movement, there's no issue with trying to empty your brain as it is 'otherwise occupied'
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